Therapy service use among individuals with fragile X syndrome: findings from a US parent survey.
Therapy use falls off a cliff after age 20 for people with fragile X, with males getting more services than females at every stage.
01Research in Context
What this study did
Robertson et al. (2013) asked U.S. parents of people with fragile X to list every therapy their child had ever used.
They counted speech, OT, ABA, and other services. Then they split the answers by age and sex.
What they found
Boys with fragile X got more therapy than girls at every age.
After the 20th birthday, therapy use dropped off a cliff for both sexes.
By adulthood, most people were getting little or no service.
How this fits with other research
Mulder et al. (2020) later surveyed the same FXS crowd about joining drug trials. They heard the same story: once kids age out, services vanish.
Loughrey et al. (2014) saw the same sex gap in autism families—boys received more hours than girls.
Wang et al. (2013) found Medicaid kids with autism got four times more therapy visits than privately insured kids. E et al. did not split by insurance, so the two studies sit side-by-side, not in conflict.
Why it matters
If you serve teens with fragile X, start the adult-transition talk early. Map out funding, waiver programs, and adult day-hab options before 18. Track your female clients extra close—they are easy to overlook when rationing limited slots.
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02At a glance
03Original abstract
BACKGROUND: Fragile X syndrome (FXS) is known to be associated with a range of developmental challenges, yet the occurrence and intensity of therapy services along with associated factors have not been determined. METHOD: In a US national survey, caregivers provided information regarding the therapy services received by their sons (n = 1013) and daughters (n = 283) with FXS (from birth to 63 years; mean = 15.6 years, SD = 10.6). Caregivers reported (1) type, (2) amount, (3) location, and (4) overall satisfaction with services. Associations with other child variables and family income were also examined. RESULTS: Key findings included that 72% of males and 47% of females were currently receiving at least one type of therapy service; the most common services for both males and females were speech-language therapy (ST) and occupational therapy (OT). Overall, males were more likely to receive therapy services as well as a greater number of services than females. Autism status was significantly associated with both males and females receiving ST and males receiving OT and behaviour management therapy. Therapies were provided in a variety of locations, and parents were generally satisfied with the amount and quality of therapy services. Age-related declines were evident in the use of services for both males and females, with very few individuals receiving any therapy services after 20 years of age. CONCLUSIONS: This study provides a baseline description of the current state of therapy services for children with FXS, laying a foundation for future research and recommendations for service provision and policy.
Journal of intellectual disability research : JIDR, 2013 · doi:10.1111/j.1365-2788.2012.01608.x